The Devil Never Wins! Our Daughter Arrived!

In the last post, I finished with describing the phone call I received from my wife saying her water had broken and our daughter was on the way 10 weeks early but just in time to avoid the C section.

I had arrived at Duke Hospital a few hours before Avery was delivered. When she came, there was no crying, no sound at all. I knew enough to know that wasn't a good sign, but I wasn't sure how bad it was. I saw that she had dark red hair, which was surprising for sure, but again being new at the dad thing, I wasn't sure if I was seeing her hair or if she just needed a bath. I could see there was a lot of fluid on her as well. All I could do was hold Nicole's hand and pray while they whisked Avery into a back room.

I found out later that the doctors working on Avery attempted to intubate, but they were unsuccessful. A second attempt was successful, but only after more than 60 seconds without any breaths. The doctors were concerned about permanent damage to her lungs and/or brain.

She weighed 5lbs 3oz at birth, but once they removed the fluid from her abdominal cyst, she was down to 3lbs 5oz. That weight decreased further over the next few days.

Avery couldn't breathe on her own or with a regular ventilator, so she was on one of the two JET ventilators they had at Duke Hospital at that time. I couldn't help but be thankful we were at Duke which had one of the most advanced Neo-Natal ICU facilities in NC. Had we been living at home, 4 hrs from Duke Hospital, we would never have been able to get her to proper care in time from our hometown in Western NC.

Avery was born about 6PM, and we finally got to see her in the NICU unit around midnight. she was in the incubator with tubes everywhere and excess fluid under her skin all throughout. But she had beautiful crimson red hair! I wasn't sure if I had seen it correctly in the delivery room, but there she was. Nicole looked at me and the nurse, "I think you took us to the wrong baby, this one has red hair!"

"No honey, that's ours. I saw her when she was delivered and that's her..." I replied. The nurse we had was an old-timer, as she would later describe herself, and she got a little twinkle in her eye when she heard our exchange.

Avery was so sickly at the time, no doctor would say whether they thought she would live or die, only that "the next 48 hours are critical."

They were finally able to diagnose the large cyst we had seen on all the ultrasounds a a "cloacal malformation." Basically all the systems in the lower abdomen were intertwined--urinary, digestive, reproductive-- in a complex mess. The first and biggest concern besides keeping her breathing was the lack of an exit point for the digestive tract. The anal muscles were present but underdeveloped, but there was no opening.

I'll never forget our first conversation with Dr Rice, who was the head of the pediatric surgery department at Duke University Hospital. "I have never seen a cloaca as complex as the situation with your daughter, and I'm really not sure what to do." My heart sunk to the floor. Here, this was the most highly specialized care center in our state, and the head guy has no idea on what to do? Dr Rice continued, "I'm going to call my college roommate from med school who is currently practicing at Cincinatti Children's Hospital. He has been working with the leading expert in the world on cloacal malformations for many years, and I think he is now taking over as the lead surgeon in that department. They developed the techniques for these surgeries at the clinic there, so I'm sure he can give me direction on what to do until we can get you up there for a visit."

I started to feel a little better, seeing God's providence already showing up for us. Just when I started to take a breath again, Dr Rice started speaking yet again. "My biggest concern is her breathing limitations. I really don't know if she is going to be strong enough to go through surgery, but she's going to die if we don't do a colostomy or something to create an opening for the digestive system really quickly. I'll be in touch once I talk to Cincinnati." And Dr Rice was gone.

Nurse Barb, the old-timer, came over to talk to us after the docs left. "This one's going to be fine, I can tell she's a fighter. That's what makes all the difference. You guys try to get some rest. I'll take good care of her for you."

Over the next 24 hours, our pastors came to visit, as well as other ministers from our home church. Our close family was all present as well. We had a great support team which was reassuring, but I just wanted someone besides the nurse to just tell me Avery would be ok.

I had spent the last 4 years in dental school, immersed in the education system which can undermine your faith in God severely. When dental school started, anyone who knew me would tell you that I was a rock-solid Christian, but slowly my faith had suffered in the intense academic environment. I still went to church and all, but the strength of my convictions had faltered. My wife knew it better than anyone, but she was looking for the same thing I was--someone to give us a word from God that Avery would be ok. Finally on the second day we heard it from a dear minister friend, Ps 118:17, she "will not die, but live and declare the works of the Lord!"

And just like that, I realized that earthly knowledge and wisdom has no power compared to a word from God! I began repenting for allowing my faith to slip over the 4 years at UNC, because I knew I would need it to be strong for my young family in the near future.

Dr Rice came back in the following day. "We have no choice but to go in to surgery tomorrow. Her tissues are so friable right now because of all the excess fluid that it's going to be quite difficult to even work on her. More concerning is the pulmonary condition, which I was hoping would improve after 24 hours so we could get her off the JET, but it hasn't. I need you to understand that there is a strong possibility your daughter will not survive the surgery because of her weak lungs, but we have no choice but to proceed if she has a chance of survival at all."

Dr Rice continued, "I spoke with my peer in Cincinatti yesterday evening, and he described to me how to perform the initial colostomy procedure. We'll talk more about following up with him after we get through this procedure. See you tomorrow."

And we will pick back up here next week!

Digital Album: The Devil Never Wins

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